After years of deliberation, a law that protects the genetic privacy of those who live in Massachusetts is soon to be enacted. It also prohibits genetic discrimination by employers and health insurance agents. Privacy and discrimination are related entities. Discrimination depends on the existence of genetic information. The right to privacy, on the other hand, permits the individual to determine whether such information is generated in the first place, and if so, how, and for what purposes, it is communicated to others. The way in which their regulation is evolving in the US seems likely to affect the way in which its citizens will manage their health and the extent to which they will participate in genetic studies.

In contrast with the Massachusetts law on insurance, genetic testing and privacy protection, the federal legislation of the United States is remarkably thin: it addresses the issue of discrimination only and in a narrow context. Specifically, the Health Insurance Portability and Accountability Act (HIPPA) prohibits insurers from using genetic information to discriminate against individuals in group insurance plans (approximately 95% of the population). It does not prohibit them from requesting or requiring genetic information, or using this information to set the premiums of those who seek individual health insurance. It does not legislate against employers who base decisions on genetic information.

Approximately 18 states lack any kind of legislation that governs the use of genetic information. And ‘genetic’ legislation is not immune from the local factors that affect other forms of state legislation: it varies enormously from state to state. For example, in Alabama, the law protects only those with sickle cell anaemia and those with a predisposition towards cancer against discrimination by insurers. In contrast, Arizona prohibits discrimination on the basis of the results of any genetic test. Furthermore, it has a number of statutes that confer rights of privacy. That the overarching HIPPA renders irrelevant the predilection of some states to prohibit discrimination against people with a genetic disposition to only certain diseases is reassuring. That it excludes about 13 million people is not. The blatant injustice of healthcare for some and not others speaks to a clear need for a public health service or at least a more sensible configuration of the present one. A public health service would also ease the headache of collating medical records for the purposes of research, should the federal government ever find a comprehensive way to ensure the privacy of medical records.

To what extent should the patchy state of privacy protection be of concern to US legislators? To geneticists? Clearly, genetic information is powerful and personal: it shapes one's perception of oneself and one's genetic relatives. A genome contains predictive information; the scope of that information increases constantly and may change in ways one cannot predict. This, combined with a visceral reaction to quantum shifts in technology seems likely to be a source of unease for many. So ensuring legal protection of privacy seems appropriate, and may augur well for those who seek to recruit large numbers of people to genetic studies. (In this respect, it is notable that the Massachusetts legislation is crafted so as to ensure that research carried out according to federal regulations is not adversely affected.) Protection of privacy is a natural corollary of anti-discrimination legislation, in that it confers upon the individual the right to litigate against damage to dignity and personhood, in addition to economic harm.

But will legislation really make a difference to risk of abuse and perceived risk of abuse? Some, like Philip Reilly, the chief executive officer of Interleukin Genetics Inc., believe that turning up the volume on legal protection is retrograde. He believes that apprehensions are fuelled by “the drumbeat of government and ethicists”; that the hue and cry over lack of legislation magnifies the risk of abuse and is inappropriate in any case, given existing protections. He points out that most research carried out in the public sector is subject to approval by Internal Review Boards, which are very concerned about issues to do with genetic privacy, and that companies in the private sector are even more attentive to these issues. He has a point, but it is difficult to assess extent of abuse without additional data. These are difficult to obtain, as proving discrimination on the part of an insurance company, absent a damning document from that company, is exceedingly difficult—even when the injured party can summon the effort to deal with the courts. On the flip side of the coin, Reilly admits it is impossible to know whether increasing emphasis on legislation is eroding people's confidence.

It is unlikely that his concerns will subside. This year provides no buck to the trend in the rise of legal and political manoevres at state and federal levels. Following President Clinton's excecutive order at the beginning of February, which prohibits discrimination based on genetic information by federal employers, a couple of bills have been proposed by Senator Tom Daschle (S. 1322) and Representative Louise Slaughter (H. R. 2457), in the Senate and House of Representatives, respectively. Originally, both prohibited the collection and use of genetic information by health insurers and employers. In attempt to force a debate on the issue, Daschle sought to append his bill as an amendment to another; the section on employment was cleaved due to a partisan vote in which 55 members of the Republican party (bar one) voted in favour (of cleavage) and 44 members of the Democratic party supported the full bill. An etiolated version of the insurance amendment is now under consideration by a conference committee; it is speculated that the entire section may be dropped. Congresswoman Slaughter, who must harbour a sense of ennui having first introduced a similar bill over five years ago, has launched a discharge petition. This effort is largely symbolic, because it would require Republican support to succeed and party lines are entrenched in the House of Representatives, in addition to the Senate.

Both of the mainstream US political parties profess concern for effectively managed healthcare and how genetic information is controlled. Vice-President Gore has been as vocal as Clinton in deliberations on genetic protection, and the Republican party platform declares a need to address genetic discrimination. One wonders what it will take for a more robust federal legislation to be put in place, or whether one's energies might be better spent looking towards the states.